Symptoms, unbearability and the nature of suffering in terminal cancer patients dying at home: a prospective primary care study.

BACKGROUND: Primary care physicians provide palliative home care. In cancer patients dying at home in the Netherlands (45% of all cancer patients) euthanasia in about one out of every seven patients indicates unbearable suffering. Symptom prevalence, relationship between intensity of symptoms and unbearable suffering, evolvement of symptoms and unbearability over time and quality of unbearable suffering were studied in end-of-life cancer patients in primary care. METHODS: 44 general practitioners during three years recruited cancer patients estimated to die within six months. Every two months patients quantified intensity as well as unbearability of 69 symptoms with the State-of-Suffering-V (SOS-V). Also overall unbearable suffering was quantified. The five-point rating scale ranged from 1 (not at all) to 5 (hardly can be worse). For symptoms assessed to be unbearable the nature of the suffering was additionally investigated with open-ended questions. The final interviews were analyzed; for longitudinal evolvement also the pre-final interviews were analyzed. Symptom intensity scores 4 and 5 were defined to indicate high intensity. Symptom unbearability scores 4 and 5 were defined to indicate unbearable suffering. Two raters categorized the qualitative descriptions of unbearable suffering. RESULTS: Out of 148 requested patients 51% participated; 64 patients were followed up until death. The SOS-V was administered at least once in 60 patients (on average 30 days before death) and at least twice in 33 patients. Weakness was the most frequent unbearable symptom (57%). Pain was unbearable in 25%. Pain, loss of control over one's life and fear of future suffering frequently were unbearable (89-92%) when symptom intensity was high. Loss of control over one's life, vomiting and not being able to do important things frequently were unbearable (52-80%) when symptom intensity was low. Unbearable weakness significantly increased between pre-final and final interview. Physical suffering, loss of meaning, loss of autonomy, experiencing to be a burden, fear of future suffering and worrying more frequently occurred in patients suffering unbearably overall. CONCLUSIONS: Weakness was the most prevalent unbearable symptom in an end-of-life primary care cancer population. Physical suffering, loss of meaning and loss of autonomy more frequently occurred in patients who suffered unbearably overall.

Depression and explicit requests for euthanasia in end-of-life cancer patients in primary care in the Netherlands: a longitudinal, prospective study.

BACKGROUND: In the Netherlands, many (45%) cancer patients die at home, in the care of GPs. About 1 out of 10 end-of-life cancer deaths is hastened by GPs through euthanasia or physician-assisted suicide. However, the relationship between depression and requests for euthanasia has never been prospectively studied directly in primary care. OBJECTIVE: This study aimed to assess the prevalence of depression in end-of-life cancer patients requesting euthanasia in primary care, as well as to assess the relationship between depression and requesting euthanasia. METHODS: Primary care patients with incurable cancer and an estimated life expectancy of half a year or shorter were interviewed every 2 months, using standardized psychometric instruments. Also, non-recruited eligible patients were monitored. RESULTS: Out of 258 eligible patients, 76 patients were recruited, of whom 64 patients were followed up until death. Of these, 27% (n = 17) explicitly requested euthanasia. One patient suffered from major depression. According to the depression subscale of the Hospital Anxiety and Depression Scale, 47% of the patients who explicitly requested euthanasia versus 28% of those without an euthanasia request suffered from a depressed mood at inclusion; the difference was not significant (P = 0.2). Corresponding figures for the last interview before death were 40% and 41% (P = 0.6). CONCLUSIONS: Major depression was not a major factor in explicit requests for euthanasia in end-of-life cancer patients in primary care. Further depressed mood was not associated with explicitly requesting euthanasia in this patient group, although statistical underpower cannot be ruled out in this small sample.